The Hardest Part About Traveling With Autism

Last winter my husband Joe and I took five red suitcases, four messy boys and one pink girl on a Caribbean vacation. As soon as our second son, Jack, climbed into the shuttle to the airport, he made an announcement to the driver: “None of us. Smoke tobacco.”

The driver looked back at me in the dim light of the van. It was 3:30 a.m., and I imagine this was not the sort of conversation he expected to have with a 10-year old.

I smiled weakly. “Uh, he’s right. None of us — we don’t use tobacco.”

Taking Jack and his autism on vacation is like bringing a fragile, anxious little fish out of a tiny backyard pond and throwing him into the ocean. You just keep your fingers crossed that he can handle a different schedule and change in scenery without getting swept away in a riptide of tantrums, meltdowns and anxiety.

Right this minute, Jack is obsessed with Oreos, something called a Bamboozle challenge, all of Disney’s evil characters, and, because of fifth-grade health class, the dangers of tobacco.

Oh, and lately he licks things, like public signs and handrails and my jacket sleeve and once in a while, the walls. I have no idea why.

So, as you can imagine, between the licking and the tantrums and the tobacco, a trip with Jack can be all sorts of crazy fun. But he actually loves to travel. He loves to see new places and figure out the best way to get there. He loves to try and guess just how blue the water is in the Caribbean.

“Blue. How blue is the ocean. Tell me now how blue.”

That is, he loves to travel as long as we let him pack his 14 Chapsticks and his beloved stuffed bunny and his pillow with the license plates printed on it and countless other useless items. For this trip, we had to talk him out of packing his humidifier. Basically, he needs to bring his inside world whenever he ventures outside. This is what makes him comfortable.

We got to the airport around 4:30 in the morning. Joe and I exchanged uneasy glances when we saw how crowded it was and the long line to check in for the flight.

As we moved our luggage and made our way onto the line, Jack fell. He began to scream the loudest, rawest, most guttural scream, and a hush fell over the entire terminal. Hundreds of people watched as Joe and I tried to soothe our flapping, flailing son.

“Jack, ssshhh, it’s OK, calm down.”

“Hurt hurt hurt HURT!”

Joe looked stricken, and I felt my own face burn.

I glanced over towards the crowd of people waiting on line and staring, and in that muted space and time, I realized the hardest part of traveling with Jack.

It’s not the tantrums or his mouth on my jacket or the obsessive questions about the flight schedule. Rather, it’s explaining him. There is so much I want people to understand about him, about us, about the spectrum disorder. So, if you are ever in an airport or on a shuttle or a bus or a train, and you see five red suitcases, four messy boys and one pink girl, this is what I’d like you to know.

Our son Jack has autism. He has trouble regulating himself, especially if he’s hurt or scared or confused. This means he screams sometimes, which can be a little jarring because he’s a giant 10-year old boy with the voice of a toddler.

But from the moment we step out of our front door, I am devoting every ounce of my energy into keeping him safe and comfortable. I am trying to make sure he doesn’t wander away from me or step on your toes or kick your seat or cut you in line. At some point, you may overhear my husband and I argue, because traveling with autism is very stressful business.

“Carrie, he needs to wear his fleece, it’s freezing in here.”

“Oh, really? We’re going to worry about that right now? You know he’s going to freak out.”

When I am not hissing at Jack to keep his tongue off the counter or assuring him our flight is on time and that we will try very hard to get him a window seat, I am looking at all the people around me. I am doing my best to anticipate his questions and comments and loud, booming observations about your wig or your skin or your hat or your baby.

I am trying to help him flex and bend and learn and grow; to see that many people are small while others are tall, there is dark and light and wide and narrow. Some even smoke tobacco, and that is OK. At the same time, I am hoping those around me may flex and bend and learn and grow; to see that some boys hop and lick and shout and fall. Some boys have autism. And that is OK, too.

Every day, I fight for his place in this world. And every day, I fight for your place in his world.

You can ask me anything. Please, ask me anything. Ask about spectrum disorder and stimming and medication and early intervention. I will tell you everything I know. You can ask Jack anything. He may not answer you, but if you really want to get a conversation going, casually mention that you think Golden Oreos are the best kind.

See, in our house, autism is not a secret. It is not a buzzword or a vague, underground rumor. It is true and vibrant and powerful. It is living within my son.

Trying to describe Jack’s autism to someone who doesn’t know him is like trying to describe the bluest ocean to a person who doesn’t see. It is deep and sparkling and brilliant and alive. It is slippery and quiet, but it can also be deafening. It likes to make waves. It’s not something you can hold in the palm of your hand, and yet all at once it surrounds you. It can take your breath away.

We are a family traveling with autism, and we are messy and loud and real. We are imperfect, yet unbroken. But please, don’t feel bad for us. Promise me you won’t shake your head or sigh or murmur about how it isn’t fair.

You see, for the longest time, fair was lost to us. In fact, we stopped looking for it altogether. But then we found it again. We found fairness and justice and truth in our boy. He is unexpected and earnest. He is delightful and strong.

In so many ways, he is just like you and me; he wants nothing more than a seat by the window and as many Oreos as he can eat. He longs to be understood. He wants people to stop smoking because it is bad for them, and for everyone around him to know he hurt his knee when he fell on the floor.

“I hurted my knee so bad. That’s how I screamed.”

And after an early morning ride on a shuttle and a fall in the airport and a very long trip on a plane, he wants to take a deep breath, close his eyes and jump as high as he can into the dazzling blue waters of the Caribbean ocean.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.